Tag Archives: Myths about Autism

Anger

Autism, Emotion, Human Rights, Neurodiversity, , , ,

Some on you may remember that as I’m editing my book for publication, parts of the material edited out is being posted here. This is from the first chapter, in a section on autistic experiences of emotion–an attempt to counter the “emotionless autistic” stereotype. So, here is “Anger . . .“

“What triggers your rage attacks?” someone asked on the Wrong Planet website.  The answers were many and varied.  “Severe bullying.” “When I felt powerless to control something.” “Cruelty.” “Feeling as if my integrity has been questioned.” “Being called ‘crazy’.” “People hurting my friends.” “When somebody tries to take my parking space” (This individual lives in New York City.) “Noise pollution.” “When people yell at me.” “Parents who abuse their children.” “Obnoxiously loud people. Obnoxiously arrogant people. Obnoxious people in general.” “Frustration from not being able to get a job.” “Lack of ability to communicate verbally.”[1]   

Their lives full of frustrations, disappointments, and infuriating experiences of cruelty and dismissal, people with autism are frequently angry.  And often this anger is very intense:

Emotions, we feel them more intensely than others and sometimes it’s too much handle. Especially emotions such as anger and frustration. In my case, I do have quite the temper, however, I JUST about manage to contain and internalise it. I fear the day I finally lose grasp and actually express anger.[2]

Young autistic children, in particular, have tremendous difficulty controlling their anger.  It tends to explode in the form of meltdowns.  The warning signs may be very subtle, hard for neurotypical adults to detect.  Then the meltdown appears to come out of nowhere, even when it has actually been building for some time.  Here an adult recalls her childhood emotions:

On the surface everything looked calm, right up to the point where the pressure became too much and I exploded with violent fury. I was never able to talk about it: the feelings were so intense that I couldn’t contain them and all I could vocalise were screams of anguished rage.  It was an anger born as much of frustration at my inability to identify and turn my emotions into words as it was of my distress and discomfort.[3]

Most children on the autism spectrum do gradually learn to contain their anger, in a process that may go unnoticed by neurotypical adults.  Here an eleven-year-old autistic student tries to control his meltdown after being severely bullied all day at school:

He stepped out [of the school] to see his papers being blown away, the girl who was being suspended for hitting him all day having apparently dumped out his things. And that’s when the meltdown occurred. He began picking up desks and throwing them. Keep in mind that he’s eleven. All of the desks and chairs ended up in a pile in the middle of the room. It was a slow-motion rage — oddly controlled, as he went out of his way to make sure he never threw a chair or desk in such a way that I would be hit by one.[4]

This angry child “went out of his way” to make sure that no one would be hurt by his actions.  Fortunately, the writer, an autistic teacher, noticed this.  A neurotypical teacher might have just focused on his throwing furniture and punished accordingly.

By the time autistic children grow into adults, they are usually able to avoid meltdowns and aggression, even when they are angry.  Of course, some adult autistics, just like some neurotypicals, never master this skill and continue to have short fuses and violent outbursts throughout their lives.  But the majority will at most allow themselves to yell at someone, or they will have a quiet “shutdown” (which usually involves seeking isolation and then sobbing).  

The real problem is that, even when they control their behavior, the anger does not go away.  Many autistics experience anger on a regular basis.  They lead very difficult and frustrating lives, and, though they may not act out aggressively, they are still prone to “angry rumination,” constantly dwelling on the things that have made them angry, going over and over events in their minds.  Autistics are prone to perseverating on particular thoughts anyway, and upsetting events can easily preoccupy them for long periods of time.  In the general population, such “angry rumination” is associated with a variety of negative psychological outcomes.  While little research has been done on the phenomenon in autistic adults, two studies have shown an association between their angry rumination and problems with anxiety and depression.[5]   More research on ways to block rumination in autistics and to lessen stress in autistic lives seems long overdue.

[1] “What Triggers Your Rage Attacks” on the Wrong Planet website, December, 2017:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=357406&start=0.

[2] DestinedToBeAPotato, in the “do you have trouble controlling ur anger?” discussion on the Wrong Planet website, February 15, 2016:  https://wrongplanet.net/forums/viewtopic.php?t=306240.

[3] Alexandra Forshaw, “The Arrogance of Sanity,” on her blog My Autistic Dance, October 28, 2018:  https://myautisticdance.blog/2018/10/28/the-arrogance-of-sanity/.

[4] Troy Camplin, “Autism in the Schools — A Personal Narrative,” on his An Intense World blog, November 21, 2017:  https://anintenseworld.com/2017/11/21/autism-in-the-schools-a-personal-narrative/.

[5] Lake-Hui Quek, et al., “Co-Occurring Anger in Young People With Asperger’s Syndrome,” Journal of Clinical Psychology 68:10 (October, 2012), 1142-48; Shivani Patel, “Association between anger rumination and autism symptom severity, depression symptoms, aggression, and general dysregulation in adolescents with autism spectrum disorder,” Autism 21:2 (February, 2017), 181-89.

We’re Not Broken

Autism, Myths about Autism, ,

If you haven’t had a chance to read it yet, I highly recommend Eric Garcia’s new Book, We’re Not Broken: Changing the Autism Conversation. As the title suggests, it is devoted to changing the conversation about autism by debunking myths and describing lived experience. Very well researched and written, by a professional (autistic) journalist.

That said, this is kind of bad news for me. I’ve spent the last 8 years writing a book about autism and human rights in the U.S., and Garcia has really scooped me. I’m not giving up on my book–it does some things his doesn’t. But I had hoped to be the first on the market with many of the points he makes. Oh well. His book is great and deserves to make a big impact.

Disruptive Behaviors: The “Movement Behaviors”

Anxiety, Education, Human Rights, Myths about Autism, visual processing disorders, , , , , , ,

 

“[School] was a nightmare full of loud sounds, bright colors, and noisy children.  The adoration I received for being ‘so smart’ faded with each grade.  I could not understand what was happening.  Instead of praise, I was constantly getting reprimanded.  Nothing made sense.  Even [the school principal] no longer meant what he said.  He said I could come and see him whenever I wanted, but he lied.  When I rose from my seat, walked out of my classroom, and went down the stairs to the main office to see him, I was in trouble.  ‘Young lady, you cannot just walk out of [the teacher’s] class and come down here.’  Tears welled up in my eyes as I tried to make sense of it.”[1]

 

Many autistic students move their bodies in ways other students do not (or at least not as regularly).  They may flap their hands, bounce up and down in their seats, twirl in the aisles, hide under their desks, get up and wander around the classroom, or try to leave the room or even the school.  (They may also behave in more disturbing ways.  Meltdowns, self-injury, and aggression towards others will be the subject of another post–for now, I want to focus on the actions just described:  flapping, bouncing, rocking, and various “out-of-seat behaviors” like hiding, wandering, and running away.)

 

Schools often view these “movement behaviors,” even more than vocalizations, as barriers to the inclusion of autistic students in mainstream classrooms.  Movement behaviors make many teachers uncomfortable because they break the visual pattern of an orderly classroom and appear to undermine discipline.  Some administrators and teachers also attribute disturbing motivations to students who behave in these ways.  They may view certain types of movement as evidence of defiance or disrespect, as acts of wilful disruption.  They fail to realize that autistic students who flap and rock and hide are not generally trying to be disruptive (with a few exceptions, to be described below).

 

In the first place, because autistic students often do not pick up on social cues from their fellow students, they may simply not understand why they can’t just move their bodies the way they want in school.  If they bounce or twirl at home, they assume that they can also bounce or twirl at school.  They may view demands that they stop as nonsensical, or–especially when their movements are related to sensory issues—they may simply be unable to stop.  As researchers and teachers are slowly coming to realize, movement is often a necessity for autistic children.[2]  Rocking may alleviate dizziness, making a student feel less likely to fall out of his or her seat.  Bouncing may help a child locate his or her body in space, diminishing the terrifying feeling of being “disembodied.”  If a fire alarm suddenly goes off, the only choice for some children will be to run away from an intolerably painful noise.  Many students with autism use movement to distract or protect themselves from sensory overload, or–on the other hand–to gain the sensory stimulation they need to remain focused on their schoolwork.

 

If some teachers are beginning to understand the connection between movement behaviors and sensory needs, far fewer understand how other factors are involved.  They may not realize that some autistic students move around because of their very eagerness to learn.  A child with auditory or visual differences may rove through the classroom trying to find a spot where he or she can access the information the teacher is presenting.  A child keenly interested in nature or in the trucks rolling down the street outside the school may run to the windows or even outside the school to pursue those interests.  Students bored with their own “toned-down” curriculum may wander around the classroom to catch a glimpse of what other students are doing.[3]

 

Emotional as well as intellectual issues may play a role.  Jeanne Davide-Rivera, the author of the passage cited above, left her classroom to visit the nice principal she had met her first day of school—the one who had actually told her she could visit him any time she wanted!  She found it intensely confusing when she was told that her behavior was wrong.  In her case, movement was a response to the desire for human connection—a desire autistic students are often assumed not to have.  Movement is even more often a response to anxiety associated with heavy academic or social unease.  In some children, anxiety leads to increased rocking, bouncing, or hiding.  Emotional distress caused by real or perceived academic “failures,” or by cruelty on the part of teachers and classmates often results in “elopement” or bolting out of a classroom or school.[4]

 

It remains the case, however, that most movement behaviors are either well-intentioned (that is, the student is actually trying very hard to be “good”) or unavoidable (he or she simply needs to move).  Only rarely is autistic “acting up” intended disrupt the class—and even then, this is not always for the reasons teachers or administrators imagine.  To give one unexpected example:  children overwhelmed by the visual and auditory stimuli in their classrooms may discover that they can hear and understand their lessons better from a desk in the hallway, which they then learn they can acquire for themselves through some planned infraction of the rules about movement.[5]  For these children, engaging in “undesirable” movement behaviors becomes the key to learning.

 

More commonly, however, deliberate misbehavior is a planned reaction to intolerable stress.  It is an undeniable fact that autistic students seldom enjoy school.  Much more often they experience school as “a nightmare” or as “hell.”[6]  Few administrators or teachers understand how painful school is for these students.  Day after day they must endure constant bombardment by sensory stimuli, the terror of (often unsuccessful) social interactions, and—most serious of all—the attentions of sadistic bullies.  (More on bullying in another post.)  After they have suffered for months or even years, some of these students consciously decide to behave in ways they know are wrong, in the hopes of being suspended and allowed to stay home.  The Wrong Planet website (an online forum for those with autism) has had several discussion threads about school suspension, and a common theme is seeking out suspension as a way to avoid bullies.[7]  What is most striking about these posts, however, is how often the authors used this approach only as a last, desperate resort.

 

So when teachers or school administrators are faced with autistic students who bounce, rock, twirl, and elope, they would do well to consider all the other possible reasons for these movement behaviors, before assuming that their students are simply being disrespectful.

 

 

 

 

 

 

[1] Jeanne Davide-Rivera,  Twirling Naked in the Streets and No One Noticed:  Growing Up with Undiagnosed Autism ([Location Unclear]:  David and Goliath Publishing, 2013), p. 34.

[2] Sadly, there remain so-called “experts” who assume that these children are deliberately misbehaving:  e.g., Deborah Napolitano and David McAdam, “Problem Behavior,” in Tristram Smith, ed., Making Inclusion Work for Students with Autism Spectrum Disorders:  An Evidence-Based Guide (New York:  Guilford Press, 2012), p. 304:  “Throughout the day, students continually have a choice [emphasis added] of whether to display the problem behavior . . .”

[3] Consider the case of Laura, described by Paula Kluth, You’re Going to Love This Kid:  Teaching Students with Autism in the Inclusive Classroom, 2nd ed. (Baltimore:  Paul H. Brookes Publishing, 2010), p. 202.

[4] See the post by WAautistic guy on a thread about “What Are Your Worst Experiences at School” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=14&t=166310&start=30.

[5] Davide-Rivera, Twirling Naked in the Streets, p. 36.

[6] See the thread entitled “Public Education is HELL for Aspie Children:  http://wrongplanet.net/forums/viewtopic.php?p=1100890;  skimming through the “School” forum as a whole makes clear why school is so often found intolerable by those with autism.

[7] E.g., the following:“Anyone Ever Threatened with Suspension?” (http://wrongplanet.net/forums/viewtopic.php?f=14&t=148672) and “Is Suspension Really a Punishment?”(http://wrongplanet.net/forums/viewtopic.php?t=194004)

The Challenges Facing Autistic Children in America’s Schools

Autistic Intelligence, Education, Intelligence Testing, Non-Speaking, , , , ,

After 1990, the number of young people with autism diagnoses educated in public schools in the United States rose rapidly;  the legal mandates of IDEA ensured that still others were educated in private institutions paid for with public funds.  Overall, then, access to educational institutions has improved dramatically for autistic children within recent decades.  It is doubtful, though, whether many of these children have reached their full educational potential.  Despite greatly improved access to schools, huge challenges continue to face autistic children seeking an education.  Few teachers are adequately trained to meet their learning needs, and indeed, those needs are still poorly understood even by “experts.”  The educational environment remains hostile, from both a sensory and a social perspective.  School buildings and classrooms are full of often unnecessary sensory stressors and distractions, not to mention intimidating bullies.  Moreover, autistic students continue to be disproportionately subject to severe and even life-threatening discipline, often for fairly minor infractions of the rules. These challenges will be the subject of the next few posts on this blog.

The most serious problem by far facing autistic students in American schools, however, is the presumption of stupidity, which leads to appallingly low academic expectations.  In one recent research project, only 56% of the autistic students studied had any academic skills at all listed in their IEP goals.  Their teachers simply did not expect them to reach grade-level academic content standards.[1]  This is because far too many teachers continue to associate autism with intellectual disability, even though, as we have already seen, current scientific research indicates that autistic people have the same range of intellectual abilities as everyone else.  The ability to speak (expressive language), depending as it does on physical capabilities, is certainly not a good indicator of intelligence.  Nevertheless, far too many (indeed, most) schools continue to assign empty labels like “high-functioning” or “low-functioning” to their autistic students, based on speaking ability and extremely problematic I.Q. testing.  Those labelled “low-functioning” are generally considered intellectually disabled.  They tend to be be shunted off into special education classrooms, which provide some life-skill and social-skill training, but often almost nothing in the way of academics.

 

One such individual, Michael Weinstein, describes his school experience in this way:

The school officials tested me and said I had an IQ of less than 70 and would never get a high school diploma, so I spent a lot of time learning how to wipe off cafeteria tables, sort utensils, and make little arts and crafts projects. Although I understood everything that was said to me, I could not indicate in any way, verbally or non-verbally, that I understood them.[2]

Eventually Mr. Weinstein learned to type, enabling him to demonstrate his genius-level I.Q. and his exceptional skills in mathematics.  Similarly, Philip Reyes reports that his teachers “were well meaning but believed I could not understand much of anything because I could not talk or write to communicate that I was smart and understood everything going on around me.”  Instead, Philip says, he was trained like an animal in school, “as everyone tried to make me act normally with candy rewards.”[3]

There is no inherent reason why special education classrooms cannot be intellectually challenging, but in practice they seldom are.  Bright young people may spend years in these classes hearing basic arithmetic facts or the names of colors repeated over and over again, but learning nothing that might later help them as either workers or citizens.  Ido Kedar, another non-speaking autistic, fiercely criticizes the thinking behind these practices:  “The assumption that people with severe autism all have impaired thinking has resulted in the underestimating of the true abilities of thousands of individuals, lack of adequate educational opportunities, isolation, loneliness, boredom, frustration, hopelessness, and a life of entrapment within one’s own body. This price is too high.”[4]

 

[1] Sara Witmer, and Summer Ferreri, “Alignment of Instruction, Expectations and Accountability Testing for Students with Autism Spectrum Disorder,” Focus on Autism and Other Developmental Disabilities 29: 3 (2014), 136-38.

[2] Michael Weinstein, “Life with Autism” on the Golden Hat Foundation blog:  http://www.goldenhatfoundation.org/about-us/blog/125-golden-hat-foundation-blog-70211

[3] “Communication Device Opens Up the World to Nonverbal Autistic Boy, Buffalo Evening News 12/3/15:  http://buffalonews.com/2015/12/02/communication-device-opens-up-the-world-to-nonverbal-autistic-boy/.

[4] Ido Kedar, “Motor Difficulties in Severe Autism,” on the Ido in Autismland blog:  http://idoinautismland.com/?p=376.

The Education of Autistic Children, 1975-1990

Autistic Intelligence, Education, Learning Disabilities, Myths about Autism, , , , ,

The efforts of advocacy groups such as the National Federation of the Blind, the National Society for Crippled Children (later known as Easterseals), and the Association for Retarded Children (today known simply as the ARC) gradually increased public awareness of disabled children and the difficulties they faced during the 1950s, 1960s and early 1970s.  Under pressure from these groups and from their constituents, Congress began investigating the lack of educational opportunities for the disabled, and then experimenting with legislative solutions, such as offering grants to school districts for the development of (segregated) educational programs for the disabled. These early legislative efforts met with only limited success, however.  In 1971-72, it was estimated that only 17 states were educating even half of their identified children with disabilities; many other states were offering education to less than a third.[1]  At the same time, exposés of the horrible conditions under which disabled children lived in many state institutions were further increasing public demand for the placement of these children in real schools.[2]

Changes were occurring in the courts, as well.  After the Supreme Court decision in Brown vs. the Board of Education (1954), which highlighted the evils of segregating schoolchildren by race, advocacy groups and sometimes individual parents began bringing lawsuits against school districts for excluding and segregating children based on disability.  Many of these lawsuits failed, but the courts found in favor of the plaintiffs in several significant cases in the early 1970s, establishing the principles that even children with severe disabilities were entitled to an education, and that local districts could not use the excuse of lack of funds to exclude disabled children from school.[3]

The combination of increased public pressure, legislative precedent, and court decisions eventuallly led to the passage of the landmark Education for All Handicapped Children Act (PL 94-142) in 1975.[4]  The EAHCA mandated that all children, even the most severely disabled, must receive a “free, appropriate,public education”—thereby laying the foundations for our current system of special education.  It required that school districts identify the disabled children within their borders and then develop a plan for them to receive the educational services they needed.  In order to be “appropriate,” their education should come as close as possible to that offered to non-disabled peers (while still being tailored to the needs of the individual child), and should be offered in the “least restrictive environment” possible—ideally in the same classroom, or at least in the same school building as their peers.  The Education for All Handicapped Children Act also laid out processes through which concerned parents could challenge a school’s decisions about their child’s education.  In the decades since 1975, EAHC has been repeatedly reauthorized and refined (and in 1990 re-named, as the Individuals with Disabilities Education Act, or IDEA).

Passing such a law was a challenge in 1975, but implementing it has proved even more difficult.  To begin with, there have always been funding shortfalls.  In the EAHC, the federal government promised to cover 40% of the costs of educating children with disabilities, but in reality the highest percentage of costs ever covered was around 17% and more often it has been around 11-12%.[5]   Even when the states fulfilled their own financial obligations (which has not always been the case), there has never really been enough money for schools to work with.  One result is that the essential infrastructure for educating disabled children—ramps, accessible bathrooms, signs in braille, etc.—were missing from almost all schools in 1975 and remains substandard in many places even today.  (Fans of the new television show “Speechless” will remember the scene in which the mother of a child in a wheelchair, who has been asked to use the same inadequate ramp used to move the school’s trash bins, sarcastically challenges the school principal to distinguish between people and trash.)

In 1975 most school administrators knew little about disabled children, and even less about the supports they needed to thrive in school; most teachers had no training at all in working with them.  This situation has improved greatly over the decades, although there still remain many opportunities for improvement.  In 1975, however, dealing with kids who were deaf or blind, or those who had motor challenges was considered a major challenge.  The struggle to provide a “free, appropriate, public education” for a psychotic or mentally retarded child, let alone one with the still rare diagnosis of autism, was overwhelming.[6]  The fact is, when the Education for All Handicapped Children Act was passed, most educators had never even heard of autism.  (Hence the appearance in education journals during the late 1970s of various articles designed to explain the condition to them.[7])

What, then, were teachers to do when they were assigned to teach some of the few children diagnosed with autism?  At first, far too many settled for simply “killing time.”  The author of a 1980 paper took a very dim view of the schedule in use in one autism classroom she had visited:

Following such a schedule, it seems assured that, after 11,340 hours of educational opportunity over 12 years of schooling, the students would realize 1,800 hours of bathroom; 2,340 hours of snack, choices, circles, and goodbye’s; 2,880 hours of playground; and assuming that ‘centers’ equals ‘instruction,’ 2,520 hours or 2-2/3 years of instruction.  Unfortunately, approximations of such a schedule can be found in too many classrooms for students with autism and other severely handicapping conditions.[8] 

She proposed a much tougher schedule, focused on teaching speech and other “functional” skills to these children.  “Functional” became a buzzword in the field of special education over the course of the next decade, a way of identifying useful life skills ranging from toileting to meal preparation to riding the bus.  The adjective seldom referred to academic skills, because, as we shall see, these were increasingly viewed as inappropriate, or “non-functional” for those with autism.

In early state efforts at implementing the Education for All Handicapped Children Act, when autism was mentioned at all, it was typically listed among the emotional disorders, along with schizophrenia.[9]  This was in keeping with the traditional understanding of autism that had prevailed in the United States since Leo Kanner first wrote about the condition in the 1940s.  When teachers and administrators in the late 1970s encountered a child who had actually been diagnosed as “autistic,” they were usually told that the child’s problems were psychogenic, caused by cold, withdrawn parents (more specifically “refrigerator mothers”).  As late as 1985, a handbook written for teachers in mainstream classrooms in Minnesota listed autism as an emotional disorder, although the author noted that “the classification of autism as an emotional disturbance is currently being questioned.”[10]

Its classification was being questioned by educators in the 1980s, because scientists’ views of autism had changed dramatically during the 1970s.  Researchers like Michael Rutter in England and Bernard Rimland in the United States had come to see the condition as a developmental rather than an emotional disorder—as “biogenic,” rather than “psychogenic” in origin.  References to the work of these researchers began to appear in educational journals in the late 1970s,[11] but the new understanding of autism took at least another decade to achieve mainstream status.  Nevertheless, as educators gradually began to accept the idea that autism was a developmental disorder, they also began to adopt scientists’ faulty assumptions about autism and intelligence.[12]  By the late 1980s, children with a diagnosis of autism were automatically assumed to be intellectually disabled (“mentally retarded” in the terminology of the day).  What had been two separate diagnostic categories in earlier decades—the rare “autistic” and the much more common “mentally retarded”—began to flow together to form one.  In educational circles autism came to mean simply mental retardation accompanied by what were usually called “bizarre” behaviors.

And this meant that even those autistic children who appeared quite bright came to be viewed as cognitively impaired—in other words, their apparent abilities were deceptive.  It might look like an autistic child could read, but he was by definition unable to comprehend what he was reading;  it might look like an autistic child could multiply, but she was merely performing rote actions, without understanding what those actions meant.[13]  Attempting to provide further academic instruction beyond what was needed to count change in a store or read a street sign was futile at best.  And so the main subjects taught in classes specifically designed for autistic children were speech and language learning, and “functional” life skills—as evidenced by the frequent appearance of articles on techniques for teaching these subjects in educational journals during the 1980s, and the almost complete absence of articles on ways to teach autistic students academic skills such as reading, writing, or math.

The passage of the Education for All Handicapped Children Act in 1975 meant, then, that more autistic children than ever before were served by public schools.  However, they were not served well by those schools, partly because of the faulty expectations mentioned above, and partly because of faulty diagnoses.   Few doctors knew much about autism in the 1980s, and they very often misdiagnosed autistic children.  In 2013, there was a brief discussion on “What were you diagnosed with in the 80s?” on the Wrong Planet website. [14]  It turns out, as we might expect, that although many of the participants had been taken to multiple specialists in their childhood, almost none had been diagnosed with autism.  Instead, they received a variety of labels.  Some—those who had good verbal skills and the ability to disguise their autistic characteristics—were declared “normal” (if a little “weird”).  They were often able to remain in general educational classrooms.  A subset of this group was diagnosed with learning disabilities (especially attention-deficit/hyperactivity disorder) and received some supports from their schools.  Most, however, still struggled to learn without supports, suffered from severe bullying, and far too often dropped out.  As one contributor put it:  “Many people with AS back in the 1980s just struggled or coped as best they could without any diagnosis. Unless you had a ‘breakdown’, or were caught trying to commit suicide, or were in trouble with the police (‘delinquent’ or ‘troubled’) you were usually left to sink or swim.” Another reports:  “I was just considered weird, strange, outcast, bullied and generally rejected by my peers. I just learned to function and survive by myself, for myself, with myself.” [15]

Many other autistic children were labelled mentally ill (obsessive-compulsive, schizophrenic, severely depressed, bipolar, socially anxious, borderline-personality).[16]  In theory, the public schools were expected to serve the “emotionally disturbed,” but few were equipped to do so effectively, so most of these children had their educations interrupted by visits to psychiatric institutions.  Still others were labelled “mentally retarded.”  One highly articulate participant in the Wrong Planet discussion describes how she was originally thought to be autistic when she was examined back in 1986; however, her doctor eventually “settled on the diagnosis of Mental Retardation because I did not fit all the requirements for Classic Autism.”[17]  She spent years bouncing back and forth between special education and mainstream classes.

And finally there were the few who were actually diagnosed as autistic.  They, too, were considered “mentally retarded” (usually “profoundly mentally retarded”) because intellectual disabiity had become an integral part of the educational establishment’s understanding of autism.  The new educational outreach to disabled children had little impact on them.  In many states, the autistic and the “profoundly mentally retarded” were still considered “ineducable,” and relegated to institutions where they received only a nominal education.  As Mel Baggs, a non-speaking, multiply-handicapped autistic puts it:  “I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real.”[19]  In other states, members of these groups were educated either in segregated schools or in separate special education classrooms within regular schools, that focused on communication and “functional” skills.[20]  This meant that many children who were actually quite bright—capable of learning and even excelling at academic subjects—were denied the opportunity to do so by the simple fact of their diagnosis and educational placement.  The educational goal had become simply to have them exhibit fewer “bizarre autistic behaviors,” and perhaps learn a few self-care skills.  And sadly, this remained the goal in many places well beyond 1990.

[1] Cited by Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013), pp. 25-26.

[2] E.g., Burton Blatt and Fred Kaplan’s Christmas in Purgatory:  A Photographic Essay on Mental Retardation (privately distributed, 1966; republished 1974 by Human Policy Press in Syracuse, NY); Bill Baldini’s television reporting on Pennhurst State School and Hospital in East Vincent, PA, 1968; Geraldo Rivera’s television reporting on Willow State School for the developmentally disabled on Staten Island, NY, in 1972.

[3] Pete Wright, “The History of Special Education Law,” on the Wrightslaw website:  http://www.wrightslaw.com/law/art/history.spec.ed.law.htm.

[4] Ruth Colker, Disabled Education:  A Critical Analysis of the Individuals with Disabilities Education Act (New York:  New York University Press, 2013): see pp. 17-43 on the EAHCA.

[5] Marjorie Coeyman, “Leaving No Child Behind is Expensive,” Christian Science Monitor 12/26/2001, p. 19; Christina Samuels, “Special Ed. Law Wrought Complex Changes,” Education Week 35:12 (November 11, 2015).

[6] The statistics commonly used in the 1970s (based on research from the 1960s) placed the prevalence of autism at somewhere between 2 and 4.5 out of every 10,000 people.  Compare this with today’s prevalence statistics, which identify roughly 1.5 out of 100 people as autistic:  https://spectrumnews.org/news/algorithm-automates-efforts-estimate-autism-prevalence/.

[7] E.g., James McDonald and George Sheperd, “The Autistic Child:  A Challenge for Educators,” Psychology in the Schools 13 (1976), 248-56; Glen Dunlap,Robert Koegel, and Andrew Egel, “Autistic Children in School,” Exceptional Children 45 (1979), 552-58.

[8] Anne Donnellan, “An Educational Perspective on Autism: Implications for Curriculum Development and Personnel Development,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), p.58.

[9] Jean Mack, “An Analysis of State Definitions of Severely Emotionally Disturbed” (pamphlet), (Reston, VA: Council for Exceptional Children, 1980), p. 10; J. Gregory Olley, “Organization of Educational Services for Autistic Children and Youth,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), pg. 13.

[10] Joan Schoepke, “Autism,” in Resource Manual on Disabilities, ed. Polly Edmund, Sue Peterson, et al., (Minneapolis:  Pacer Center, 1985), p. 89.  Oddly, in 1982 Hawaii shifted autism from the “emotionally disturbed” category to “other health impaired:”  Memo from Donnis H. Thompson (State Superintendant of Education) to District Superintendants, Principals, Special Services Teams and Special Education Teachers, “Addendum to “Programs and Services for the Orthopedically Handicapped and Other Health Impaired” Section of “Program Standards and Guidelines for Special Education and Special Services in Hawaii” (September, 1982).  The argument was that autism was distinct from mental retardation, emotional disorder, or learning disorder, and the only remaining category was “other health impairment.”

[11] Glen Dunlap,Robert Koegel, and Andrew Egel, “Autistic Children in School,” Exceptional Children 45 (1979), 552.

[12] See my earlier posts on “Autism and Intelligence.”

[13] Sam B. Morgan, “Understanding the Diagnosis of Autism:  Initial Counseling of Parents and Other Family Members,”, Meeting Their Needs: Provision of Services to the Severely Emotionally Disturbed and Autistic:  Conference Proceedings (Memphis, TN, 1984), pp. 48-49.

[14] “What Were You Diagnosed with in the 80s?” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365

[15] Posts by One A-N and TalusJumper to the “What Were You Diagnosed with in the 1980s?” discussion on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365.

[16] “What Were You Diagnosed with in the 1980s?” discussion on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=3&t=243365.

[17] MusicIsLife2Me, “My Possible Wrong Diagnosis of Mental Retardation” on Wrong Planet:

http://wrongplanet.net/forums/viewtopic.php?t=217277.

[18] Charles Martel Hale, Jr.  “I Had No Means to Shout” (Bloomington, IN:  1st Books, 1999), p. 25.

[19] Mel Baggs, “Empty Mirrors and Redwoods,” published May 12, 2014 on the Ballastexistenz blog:

https://ballastexistenz.wordpress.com/2014/05/12/empty-mirrors-and-redwoods/.

[20] See the data provided by Douglas Biklen, “The Myth of Clinical Judgment,” Journal of Social Issues 44 (1988), pp. 132-33.

Joy and Autism 1

Emotion, Joy, Myths about Autism, Uncategorized, , , , ,

 

The most widely disseminated public narratives about autism outline the “tragedy” of the condition—the despair and misery it supposedly creates, especially among the parents of children with autism.  These narratives were brought to special prominence in the controversy surrounding Autism Speaks’s notorious 2009 ad campaign “I Am Autism,” but they are also extremely common in the titles of books and articles, as well as in everyday conversation.  The fact is, however, that many parents of autistic children find their family life far from “tragic.”  And more importantly, many autistic people describe their own lives in very positive terms, while still acknowledging the difficulties they face.

I wanted to start this series of posts on autism and emotion with a discussion of joy, because—although the word seldom appears in media accounts of autism, and although the emotion itself has seldom been studied by researchers on autism—autistic people themselves often write about joy, about the delight and deep pleasure they find in their special interests, in the sensory world around them, and especially in the practice of “stimming.”

Here is the incomparable Julia Bascom, in a blog post that has circulated widely within the neurodiversity community, entitled “The Obsessive Joy of Autism”:

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. . . .

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.[1]

The very intensity of the autistic experience—the heightened sensory experience, the deep focus on special interests, the broad awareness of multiple stimuli—can cause considerable distress when beyond the individual’s control, but it can also give rise to astonishing experiences of beauty, delight, sensual pleasure, and joy when the individual can make use of that experience for her or his own ends.

Such moments of delight are achieved primarily through what scientists often describe dismissively as “stereotypic” or “repetitive” behaviors—hand flapping, rocking, spinning, bouncing, etc.  For many years, autism therapists tried to eliminate these behaviors, in an attempt to “normalize” autistic people.  The mantra “quiet hands” was regularly chanted in special education classrooms.  More recently, scientists and autism professionals have begun to recognize the importance of “self-stimulatory behaviors” (another scientific term for these actions) as a calming response to stressful situations.  It has therefore become less common for therapists to try to eliminate them completely, although it is still usually recommended that they encourage their clients to self-soothe in more “socially acceptable” ways (by playing with fidget toys, sitting in special chairs, etc.), rather than by the means of their own choosing.  However, I have never seen a scientist, teacher, or therapist recognize the importance of self-stimulation as a source of positive, indeed deeply positive, emotional experience.

The value of “stimming” is, however, a frequent theme of autistic writing (which scientists and other professionals who wish to understand autistic experience would do well to consult).[2]   Rocking, hand-flapping, and spinning are not only responses to distress, but also, and much more importantly, forms of play.  They provide intense satisfaction, mental stimulation, and sensory delight to autistic adults as well as children:

“When I flap I get a feeling of overwhelming joy and creative thoughts and images come from no where. My brain functioning becomes super fast and I can create perfect images or beautiful sentences in my mind.”[3] 

“I have difficulty regulating many of my body functions such as heat and cold or being overwhelmed by too much motion, light, sounds, etc. but I have access to a deep, deep, deep joy by manipulating movement, light, sounds, etc. on my own.[4]”

“In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost.”[5]    

This “obsessive joy” is a wonderfully positive thing—that should be encouraged in autistic children and celebrated in autistic adults.  It can, however, also have an addictive quality, which I will discuss in my next post.

 

 

 

[1] Julia Bascom, “The Obsessive Joy of Autism,” Just Stimming blog (https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

[2] http://what-is-stimming.org/links/

[3] October 7, 2010 comment by “NothingsWrongWithMe” on “Understanding Hand-Flapping and What to Do (Or Not Do) About It,” on the Aspiring Dad blog (https://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/)

[4] “I is for Identity-first Language” April 10, 2015, on the Unstrange Mind blog (https://unstrangemind.wordpress.com/2015/04/10/i-is-for-identity-first-language/)

[5] “At the Intersection of Gender and Autism—Part 3” December 4, 2014, Musings of an Aspie blog (https://musingsofanaspie.com/tag/girlhood/)

 

Faces

Emotion, Reading Facial Expressions, Uncategorized, ,

Beginning in the late 1960s, psychologist Paul Ekman began arguing that certain facial expressions were universal.  He and his colleagues developed cross-cultural experiments that showed how people in very different societies both used their own faces and “read” other people’s faces in the same way.  No matter what their background, people expressed six basic emotions (happiness, sadness, disgust, fear, surprise, and anger) using the same facial muscles; when they saw those muscles come into play on someone else’s face, they were generally able to interpret correctly the emotion the other person was feeling.[1]   Ekman and his colleagues developed and refined FACS, a system for systematically coding the movements of facial muscles, and then EMFACS, a system for interpreting spontaneous displays of emotion, using the movement of facial muscles.[2]  Both systems have been widely used in psychological research, as well as in other contexts. Other coding systems have been developed by other researchers, based on their own theories of emotion and its physical expression.[3]  One of these other systems was used at Cambridge University in the development of Mindreading™, a computer program intended to help children with autism learn to read neurotypical faces in the same way neurotypicals do.  Mindreading™ is the gold standard for this effort, but many other computer programs and phone apps have similar goals.[4]

There is a market for such products because one of the hallmarks of autism is difficulty in interpreting neurotypical people’s emotions.  While Ekman claimed that the ability to read the six basic emotions was universal, most autistic people cannot instinctively do this.  However, many autistic adults have learned– through study and practice–to interpret facial expressions quite well.  In fact, a fascinating series of mystery novels by British author Estelle Ryan is based on this learned ability.  Her autistic protagonist, Genevieve Lenard, has studied psychology (and presumably something like the EMFACS system) and has become so adept at reading the fine details of facial movement and body language that she is employed by an art insurance company to detect people lying in videotaped conversations.  Lenard is the fictional exception, however.  While many autistics can learn to detect the basic emotions in people’s faces, more complex emotions, such as embarrassment, generally elude them.[5]

Autistic struggles with facial recognition have attracted a great deal of attention from psychologists, neurologists and other researchers.  A huge body of scientific literature exists on this phenomenon and its neurological causes.  However, a closely related problem has received no scientific attention at all, despite its inherent interest.  And because this problem has not been studied, we do not know whether the failure of neurotypicals to read autistic faces is because autistic people express emotion using different facial muscles (in which case, Ekman’s claims for “universality” fall apart), or because neurotypicals have a deficit of some sort in the ability to read faces different from their own.

“Flat affect” (or the less severe “blunted” and “restricted affect”) is common among autistic people.  Their faces simply move less than those of neurotypicals; they may talk with stiff lips, without using other parts of the face—in other words, without facial expressions recognizable to neurotypicals.  The latter, however, have a genetic predisposition to expect particular facial expressions during certain kinds of social interactions.   This is true across cultures, at least for the basic emotions. [6]  Someone who does not produce the “right” expression at the right time, or whose face simply remains immobile, is experienced by neurotypicals as somehow “off”—as “weird” or downright “creepy.”  Consider, for example, this interaction between autistic blogger Cynthia Kim and a little boy visiting her house.  The two played together enjoyably in the morning, and the boy wanted to sit next to her at lunch.  But after lunch he told Kim: “you scare me.”  Kim pondered the child’s reaction for several months, and finally concluded that it was the lack of expression on her face that he had found so frightening:  “The technical term for this is flat affect, which means that a person displays reduced emotional expressiveness. It takes a five-year-old to put it in plain English though: you scare me.”[7]

Neurotypicals often see autistic people’s relative facial immobility as reflective of either a sinister masking of emotion, or more commonly as an “unnatural” lack of emotion.  The assumption that autistics don’t feel emotions (or even pain) remains, sadly, commonplace in today’s American society.  Interestingly, this assumption seems particularly common and unquestioned among younger neurotypicals.  A student Prezi presentation on Asperger’s syndrome from April 2016 states unequivocally that “Someone with Asperger’s feels no emotion and does not really care about a lot of anything.”[8]  “Imagine a world where you feel no emotion,” writes another student reviewing Mark Haddon’s The Curious Incident of the Dog in the Nighttime, a novel written from the perspective of an autistic teen (whose emotions are actually described in the novel!).[9]  But the stereotype of autistics as emotionless is also promoted by many adults—including some who really should know better.  Guillermo Sapiro is an engineering professor at Duke University, who recently worked with a professor of Child Psychology to develop a phone app designed to detect warning signs of autism in young children.  In talking to reporters about the app, Sapiro stated that, “Lack of emotion and social sharing are possible characteristics of childhood autism.”[10]  Presumably Sapiro had learned something about autism from his colleague in psychology, and he may have intended to say “lack of emotional expression.”  Nevertheless, his claim that autistic children “lack” emotion was widely repeated in the press, and it feeds the broader cultural stereotype of the emotionless autistic.

Not all autistics display “flat affect,” however.  Some of them “make faces”—that is, they produce facial expressions commonly considered inappropriate (except when produced by young children, playing with other children).  Autistic adults, as well as children, may purse their lips, scrunch up their noses, frown deeply, stick out their tongues, etc., often while making non-verbal noises of one kind or another.  Sometimes, they are doing this on purpose, to express anger or disgust, or (in the case of children) just to be annoying.  In other cases, however, such facial movements may be unplanned and even unnoticed by the person making them.  One little boy got into trouble for “making faces” at his “respite person.”  When his mother asked him why he was doing that, he replied, “Mommy, sometimes I just make faces for no reason. I didn’t know I was making faces at Miss X. I was just making them. Sometimes it just happens and I don’t know why it’s happening. I don’t make them for any reason.”[11]  “Inappropriate” faces are not necessarily intentional or expressive of any particular emotion.  Nevertheless, they often offend others, such as the respite person in this story.

Concerned about this possibility, neurotypical parents often try to make their autistic children at least aware of what they’re doing.  The mother just mentioned tried to explain gently to her son why people might “think he is trying to tell them something with just his face,” even though he didn’t mean to.  She would stop him whenever he moved his face in ways she considered potentially problematic, and ask him whether he was trying to tell her something with his face.  Self-awareness of “making faces” seems like a useful skill for a parent to teach his or her child.  Many other neurotypical parents, however, are more interested in policing their autistic children’s faces, striving to make them appear “normal.”  An online support group for parents of autistic children discussed how to train the kids (with cookies) not to produce the “ugly” faces, but only the ones the parents considered “cute,” or “appropriate.”[12]  Some scientists also want to “normalize” autistic faces:  a professor at Virginia Tech, for example, has developed a computer to teach children with autism not only how to recognize other people’s facial expressions, but also to “reciprocate” them.[13]  I will have more to say about the “normalization agenda” in a future post.

For the moment, however, I would simply note that neurotypicals appear to have just as much trouble reading autistic faces, as autistics do reading neurotypical faces.[14]  They may interpret the expressions on autistic faces incorrectly, as evidence of anger, lack of interest, disgust, mischievous intent, or even insanity.  And they may interpret “restricted,” “blunted” or “flat affect” as evidence that the autistic person feels no emotion at all.  Very little research has been done on this phenomenon, even though it is not only inherently interesting, but also has powerful practical implications for the well-being of autistics living in society.

 

 

[1] Paul Ekman, “Universals and Cultural Differences in Facial Expressions of Emotion,” Nebraska Symposium on Motivation, 19 (1971), pp. 207-82; Paul Ekman, Wallace Friesen, et al., “Universals and Cultural Differences in the Judgments of Facial Expressions of Emotion,” Journal of Personality and Social Psychology 53 (1987), 712-17.

[2] Paul Ekman and Erika Rosenberg, What the Face Reveals:  Basic and Applied Studies of Spontaneous Expression Using the Facial Action Coding System (FACS), 2nd ed. (Oxford, 2005), describes the development and use of these systems.

[3] Karsten Wolf, “Measuring Facial Expression of Emotion,” Dialogues in Clinical Neuroscience 17 (2015), 457-62.

[4] The program is distributed by Jessica Kingsley, a publisher who specializes in works on autism:  http://www.jkp.com/mindreading.

[5] Ofer Golan, Jacqueline Hill and Simon Baron-Cohen, “The Cambridge Mindreading (CAM) Face-Voice Battery: Testing Complex Emotion Recognition in Adults with and without Asperger Syndrome,” Journal of Autism and Developmental Disorders 36 (2006), 169-83; see also Ofer Golan,Yana Sinai-Gavrilov, and Simon Baron Cohen, “The Cambridge Mindreading Face-Voice Battery for Children (CAM-C): complex emotion recognition in children with and without autism spectrum conditions,” Molecular Autism 6 (2015), 22.

[6] Karen Schmitt and Jeffrey Cohn, “Human Facial Expressions as Adaptations:  Evolutionary Questions in Facial Expression Research,” American Journal of Physical Anthropology 44 (2001), Supplement:  Yearbook of Physical Anthropology, 3-24—see especially pg. 15 on the social difficulties of those who display flat affect.

[7] “You Scare Me,” on the Musings of an Aspie blog:

https://musingsofanaspie.com/?s=you+scare+me

[8] https://prezi.com/7nmzsborbhrl/aspergers-syndrome/

[9] http://www.notrequiredreading.com/books/curiousincident.php

[10] https://ssri.duke.edu/news/now-app-could-help-diagnose-autism-children

[11] http://www.modernmom.com/ee91278c-3b3d-11e3-be8a-bc764e04a41e.html

[12] http://www.mdjunction.com/forums/autism-discussions/general-support/1596632-does-any-ones-child-make-faces

[13] https://www.ece.vt.edu/news/ar16/making-faces.php

[14] Rebecca Brewer, Federica Biotti, et al., (“Can Neurotypical Individuals Read Autistic Facial Expressions?  Atypical Production of Emotional Facial Expression in Autism Spectrum Disorders,” accepted for publication in Autism Research ) have shown that autistic individuals produce such idiosyncratic facial expressions that neither neurotypicals nor other people with autism can read them reliably.

 

 

Justifications

Uncategorized, ,

Whenever a person with autism is denied a living wage, educational accommodations, necessary health care, or just plain respect, it is always possible to find some spurious justification for that denial.  “Autistic people lack empathy.”  “Autistic people have no self-control.”  “Autistic people are too stupid to learn.”  “Autistics hate other people.”  Try googling phrases like these and you will rapidly find yourself becoming depressed.  They are all over the internet and all over face-to-face communications as well.  So before we talk about rights, lets have a look at these justifications and how much validity they really have.